By Shanika Sriyananda
“In ancient times there lived a little girl near an ancient tank in Anuradhapura. Her name was ‘Sayanu baba’. She had a malli. His name was ‘Iyanu baba’. They had three pets,” the story with some fine sketches, was narrated with a silvery voice.
The little story unfolded how the little girl called ‘Sayanu’, who couldn’t talk and walk like her brother ‘Iyanu’, found her friends – ‘Ayanu’, ‘Yayanu’ and ‘Thiyanu’.
Finally, the four friends, who had a journey to explore India on horn bills, went home. The story ends: “Then they all went home. Sayanu baba was so happy. She had found friends at ‘AYATI’.”
This little story held the packed audience spellbound and they looked astonished when they heard that this story was written and drawn by four autistic children, who are six, eight and nine years old.
Addressing a burning national issue
‘Ayati’ – what is it, where those little highly talented story-tellers and artists found friends and happiness? It is the country’s first National Centre for Children with Disabilities to come up in a beautifully landscaped location in Ragama.
The project – Ayati means ‘Hope’ in Sanskrit – was launched by the Hemas Holdings PLC together with the Faculty of Medicine, Kelaniya University, on 20 September.
The Ayati centre will provide opportunities and hope for children with disabilities to achieve their maximum potential and be fully integrated into our society. By establishing a national centre of excellence to provide multidisciplinary care for children with various disabilities, this initiative of public-private venture will address a burning national issue prevailing in the country.
The centre will be set up at the Faculty of Medicine of the University of Kelaniya at Ragama, as it is the only medical faculty in the entire Asian region that has a Department of Disability Studies, which offers a multidisciplinary team for the care of children with disabilities. It is also easily accessible by public transport as both the railway and bus stations are in close proximity to the Faculty premises.
Namal Udayanga was a disabled child who died few years ago. Living in a remote village in Hambantota, his mother struggled daily to take him to the school. With no means of hiring a trishaw, she carried him to the main road through a bumpy gravel road. But she didn’t abandon her desire to give him the primary education until he died prematurely.
In a video shown at the function she recalled how she struggled to take him to the school and to hospital while most of the people ignored them and bus drivers sped up when they saw her waiting to get into the bus carrying her son.
“My son was born with mental and physical disabilities. But he could study though he couldn’t walk. I used to carry him to the school. No bus would stop at the halt when they saw me carrying my son. When I took him to the hospital, the staff didn’t care about him. He was left with no attention. People didn’t want to see my son in the morning as they think disabled children bring them bad luck,” she said in a quivering voice.
With Ayati coming up soon, these children will not be left isolated and traumatised any more. They can have hope for a better future as it will help them and their parents shed light into their lives. They will be supported to bloom to become productive youth.
First national centre of this nature
“Disabilities are on the rise worldwide for multiple reasons. I am glad that we have launched this project to address a national need in the country with a vision to enable children with disabilities to reach their unique potential. At present we run a small clinic with minimum facilities where approximately 1,500 children are registered,” Prof. Nilanthi de Silva, Dean of the Faculty of Medicine, University of Kelaniya, said.
The proposed centre will deliver services to a larger community, providing initial assessment followed by interventional therapy where necessary, along with basic vocational training and life skills. Medical assessment, speech and language therapy, audiology and occupational therapy as well as physiotherapy, will be available at the centre under one roof.
“We are also fortunate to receive a proper training and research facility. This will definitely enhance the experience of many undergraduates and regular foreign graduates who visit the university as well as the lives of a lot of parents who have children with disabilities, and the children themselves. The transformation factor of this initiative is that it will be the first national centre of this nature,” Prof. de Silva said.
While enabling such children to reach their unique potential, it is expected that Ayati will also provide training to parents and service providers such as midwives, preschool teachers and primary teachers. The centre will also be affiliated with other recognised institutes in Sri Lanka, thus providing parents with the opportunity to receive further referrals or treatment, etc.
The proposed Ayati centre, which is designed by renowned Architect Channa Daswatte, is spread across 1.5 acres in Ragama with a 42,000 sq.ft. floor area. With an estimated cost of approximately Rs. 350 million, the centre will function as a hub which is connected to the peripheries within 25 districts in the country. It will pioneer the provision of telemedicine to distant centres within low-resource areas during the initial phase.
Hemas extends helping hand
Abbas Esufally, Group Director, Hemas Holdings PLC and Chairperson, Hemas Outreach Foundation said that the company initiated the Ayati project due to the success of its primary CSR project ‘Piyawara’, which focus on early childhood development.
“It was launched in 2002 together with the Ministry of Women and Child Affairs and now ‘Piyawara’ has become a National Project with 41 pre-schools islandwide and more in the pipeline. Today, there are over 100 teachers and approximately 3,500 children in ‘Piyawara’ pre-schools. Over the years it has grown in stature and impact to become one of Sri Lanka’s most successful public private partnerships. The confidence and trust gained through our partnership with the Government led us to initiate a project of this nature to address the burning issues of children with disabilities,” he said.
The centre will be managed by an eminent Board of Trustees chaired by the Dean of the Faculty of Medicine University of Kelaniya. An independent accountancy firm will be appointed to be the Fund Manager and Ernst and Young will be the auditors.
Hemas Holdings PLC CEO Steven Enderby said that the aim of the company was to contribute its assistance in ensuring equal access to education, healthcare, social participation and employment for children with learning disabilities in Sri Lanka.
“A significant amount of capital for the proposed Ayati centre will be funded by Hemas, but we would like to invite all other corporates and business partners to join us and be a part of this much-needed facility in Sri Lanka,” he said.
A dream come true
Shiromi Masakorala, the Executive Director Hemas Outreach Foundation and Head of Group Sustainability and Corporate Communication of Hemas Holdings PLC, said ‘Ayati’ was a long-felt need and also a dream come true for the company, which is always extending help to promote education among children of Sri Lanka.
Masakorala revealed what made her propose that her company embark on a national facility to help children with multiple disabilities.
“Do you think that there are mothers who pray that their children with different disabilities will die just a few hours before they breathe their last?” she asked.
“Yes, six years ago, I met a group of mothers whose children can’t walk, talk and think as they were born with various cognitive and physical disabilities. They said: ‘Every mother wants her child to live 100 years but our only wish is to see our sons and daughters dead just one hour before we die as no one will look after them like us.’ I felt very helpless but was determined to find a way to help them,” Masakorala said, recalling the very first incident that led to the birth of Ayati.
She started searching for more details about children with disabilities and the available facilities for such children. Each time she went to ‘Piyawara’ centres around the country, she started looking for children with disabilities and listened to pathetic stories on how their parents were struggling to raise them.
“Most of the parents said that the villagers did not want to meet their disabled sons and daughters in the morning as they think if they see them in the morning it will be a bad omen for them. Social stigma has made some of the parents lock up them in rooms or leave them at home with no education,” she explained.
The lives of those mothers become nightmares as their husbands leave the family with the birth of disabled children. At village level, people think giving birth to a disabled child is a fault of the mother. According to Masakorala, out of 40 children at the Piyawara Centre in Alokapura, Hambantota, 30 small kids have no fathers.
Living in very remote areas with less facilities, most of these mothers are struggling to educate their children while doing odd jobs to make ends meet.
Armed with startling information on pathetic situations and statistics relating to disabled children, Masakorala approached the top management of the company, which earlier agreed to expand the ‘Piyawara’ project to help disabled children and get approval for the novel project.
“I am very thankful to my company for giving the final nod to embark on this noble project to ensure a brighter future for the disabled children in this country. I am very positive that Sri Lanka can produce some Sri Lankan Albert Einsteins through this project. Most of these children, who are as capable as normal children, just need a small push to brush up their skills to become productive citizens of Sri Lanka,” she said, adding that society needs to be more empathetic rather than feeling sorry for these small children.
Masakorala said that any company, organisation or individual who like to contribute to Ayati could sponsor to build units like speech and language therapy, audiology, occupational therapy and physiotherapy. “Although Ayati was a brainchild of Hemas, we will not display our name as this is a national centre,” she explained.
Battling the stigma
Ayati is supported by cricketing legends Kumar Sangakkara and Roshan Mahanama, who have joined the project as trustees and will have a campaign against the stigma attached to disabled children and get the necessary support to complete the construction of the centre.
“I am happy and feel honoured to become one of the Brand Ambassadors of Ayati. I will support not only this project but will contribute to spread the message across the country. Former Indian Premier Dr. Abdul Kalam once said that ‘you have to dream for your dreams to come true’. I request all to join hands with us to make this project a reality,” he said.
Kumar Sangakkara and his wife Yehali first had the idea of having a centre for children with multiple disabilities but when they were informed by Mahanama about Ayati, they joined the Hemas Holdings PLC to make the project a success.
“These children are not yearning for your sympathy but your contribution, facilities for them to live and study and opportunities to grow. You are not helping us but for these children who can be productive youth who want to contribute their service to the country,” Sangakkara requested.
Presenting a gift to the invitees, Masakorala said: “This small mug has a small defect. But it is beautiful and usable as any other fine mugs. This is same with these children. They are beautiful but have small defects.”
Pix by Gitika Talukdar
Hemas believes in walking the talk
Kosala poses with the two Ayati Brand Ambassadors – Roshan Mahanama and Kumar Sangakkara
Kosala Perera, with Down syndrome, is an office assistant of the Hemas Sustainability Team. He was busy at the Ayati launch ceremony. With Hemas’ new decision to offer employment opportunities for 0.05% of the total number of employees to differently-abled youth, the company has recruited 30 of them.
Despite his cognitive disability, Kosala has shown his talents in handling the tasks given to him well. Always wearing a smile, the youth who was able to go to school only up to Grade 3 knows how to write and do his work neatly.
“Everybody in the office is kind to him and loves him. He is a multi-talented, pleasant and friendly boy. We will polish his skills to turn him into a capable staffer,” Masakorala said.
When someone asks him where he works, Kosala, who draws a five figure salary, proudly says: “I am working at Hemas.”